you must go on

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Today I left my son’s doctor’s appointment under the crushing weight of disappointment.  This was a follow up appointment to discuss a number of referrals for Aaron.  Here are the various statuses:

  1. On a wait list for an indeterminable amount of time.
  2. Another referral is ‘being reviewed’ – he isn’t even on the wait list yet.  (A pre-wait list?). Once he hits the list (if ever), the wait list is many months long.
  3. One service is $190/hour.  Another is $100/hour.  Yet another is $85/hour.
  4. The recommendations from the health care professional report won’t be funded by the school.
  5. We can’t get him into a publicly funded service because the ministry won’t open a file for us.
  6. Our doctor recommended we take the private, expensive options because the public system is of such low quality.

I slunk out of that appointment, my head hung low, my heart heavy.  Aaron was excited about a promised Dairy Queen lunch, so I stood taller, put a smile on my face and did my best to be a good mom.

I’m feeling raw and uncensored.  In response to this Maclean’s article (sure enough, alluding to the ‘risk’ of Down syndrome, a chromosomal ‘abnormality’), I tweeted:  Stop saying this shit.  I’ve been revisiting Aaron’s experience with inclusion (or lack thereof) when we were interviewed for this Globe and Mail article.  Frankly, those memories of Grade 1 bullies, dried up birthday party invites and general exclusion have been a real bummer.

The school informs me that his new special ed program doesn’t begin until mid-September, drop off time is 9 am (except for Wednesdays when it is 9:30 am) and pick up is 2:25 pm.   I’m not sure how I’m supposed to work – from 10 am to 1:45 pm?  I asked the teacher what other parents did before/after school (since our kids are over 12 and not eligible for daycare – not like we were eligible for that anyhow since the wait list for supported childcare is so long) and she told me:  well, most of the families have autism funding.  Well, sadly my kid has the wrong diagnosis for any sort of funding in this province.  Another fail.

NONE of this is Aaron’s fault.  We might blame the system, but the system is made up of people – living, breathing people – who make decisions that affect the real lives of families. I work inside that system.  This first hand experience makes me feel full of shame, for I am the system too.   I catch myself inching towards the mean and bitter mom category when I remember this:

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Oh right.  It is September 1.

After the doctor’s, Aaron hung out with a lovely young university student who was taking him to play basketball, so I went for sushi.  I went for a walk.  I sat in the library. We might not have respite funding, and we can hardly afford this, but dammit, I’m pulling out all of my self-care strategies and feel a bit better, surrounded by books and pounding out all my troubles into my keyboard.

If you are having a hard month too, my friends, you are not alone.  We must solider on, as Samuel Beckett says:

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In the quiet of the library, I remember last Saturday night.  Our next door neighbour invited me to a yoga class on her terrace under the setting sun. Afterwards she and her husband hosted a party, and Aaron and my husband wandered across the hall, bearing antipasto.  Aaron sat on the couch and patiently listened to the adult talk, for he was the only kid there.  One of our neighbours, new to Canada, said to him:  I have a present for you…and gave him a bear whistle.  Take this with you, she whispered.  If you see a bear, or if anybody is a bully to you, blow it loud.  Aaron nodded, cared for by this sweet sentiment.

Later, Nina Simone played on the stereo.  Our hosts got up to dance, their arms comfortably entwined around each other after 40 years of marriage.  Aaron watched them carefully, and then another neighbour asked him to dance, and then another.  He accepted, shyly.  I’ll never forget how pleased he looked, dancing with the ladies in that little living room.  This memory is like magic.  If I close my eyes and remember, it erases all the wait lists, our depleting money, the lack of access …it is all gone.  It is only my youngest boy slowly dancing with a kind lady, a slow smile spreading across his face, knowing full in his heart that he belongs, right here and right now.  He’s conquered the world with his very being, and we are both at once at peace.

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